Saturday, April 29, 2017

I
have always been a positive person. I’m an
eternal optimist, always holding on to hope, always looking to focus on the
silver lining no matter how cloudy life gets.
Sometimes I put pressure on myself to keep that up – partly because I
just prefer it to being sad, partly because I feel like a hypocrite when I don’t,
and partly as a matter of self-preservation.
Even (or especially) since illness has become such a big part of my
life, I find reasons to keep my smile, things to be grateful for daily. I feel like I'm supposed to say I’m lucky, it’s not that bad for me …
not compared to the others.

When
I was finally diagnosed (after 8 years of trying to figure out what was wrong),
I googled Sarcoidosis and the first
thing that came up was the Bernie Mac Foundation: started by his wife after he
DIED from this disease. I haven’t died,
so I’m lucky, - it’s not that bad.

In
the online groups I frequent, I see post after post about people hospitalized
due to their illness. I haven’t been
hospitalized, so I’m lucky – it’s not that bad.

At events I’ve attended, I’ve met people who must travel with
portable oxygen tanks. I haven’t
required oxygen, so I’m lucky – it’s not that bad.

A
friend of mine was misdiagnosed with lung cancer and treated with toxic
chemotherapy for years before being correctly diagnosed with sarcoidosis. I haven’t been misd- … well, I haven’t
been misdiagnosed withcancer (RA, Lupus, Psoriatic Arthritis,
Still’s Disease, and Undifferentiated Connective Tissue Disease, but not cancer),
and I’ve only had low-dose
chemotherapy treatment, so I’m lucky – it’s not that bad.

I
feel like I’m expected to say that I’m lucky because it’s not as bad as it
could be, or as bad as it is for some others: I haven’t died or come close to
dying from my illnesses. But is that really the standard we should use for “luck”? Yes, I’m grateful to be alive … but lucky?

Sunday, April 16, 2017

When my mother
was diagnosed with thyroid cancer over 20 years ago, she never really talked about
it.She didn’t want to make a big deal
of it, didn’t want to worry my grandmother or anyone else.She never even really said the C word until
years later.She just had “a thing taken
care of,” and that was the end of it.Even when we started doing events with the American Cancer Society, she
was hesitant to own it for herself, to join with others in the Survivor Lap.

Anyone
who knows me (or follows this blog) knows that I am not shy when it comes to
talking (or writing) about my illnesses. You’ve seen my posts about Sarcoidosis
Awareness Month, Arthritis
Walks and advocacy activities, and my involvement with World
Autoimmune/Autoinflammatory Arthritis Day.
It took a little while to get comfortable with that, to get over the
embarrassment and the fear of what other people would think of me. Ultimately, I had to just get over it. These illnesses aren’t my fault – I didn’t do
anything to bring them on myself – and if writing about them can help anyone else,
then that’s more important anyway.

That
said, I’ve still been mostly quiet about one illness/area. Physically, the details are not what anyone
wants to think about, so I don’t write about them. Psychologically, I was scarred by my third
grade teacher: if any student had to go
to the bathroom during the school day, she said we had 3 minutes; any longer and we would be in trouble (she assumed we must’ve
been playing, not actually using the facilities). I was conditioned to have this negative association
with an entire system; a natural biological process became synonymous with
being bad. Even though I now know how wrong she was, it’s been
so deeply ingrained that nearly 35 years later I’m still not comfortable discussing
it.

I
recently discovered that in addition to Sarcoidosis Awareness Month, April is also
IBS
Awareness Month. My initial instinct
was to just let that pass without a word … but then I thought about why I write
about the rest.

The
shame and secrecy make it so much worse.
Maybe if I’d heard people talk openly about this type of thing when I
was younger, it wouldn’t have been as bad for me. Maybe I could have spoken up when I was
having problems, rather than waiting until I had to be brought to the emergency
room at 8 years old. Maybe I wouldn’t have
developed such unhealthy habits that only make a “bad” situation worse. Maybe I wouldn’t have felt so isolated,
living with a problem that I couldn’t talk about, and even doctors couldn’t
easily explain or resolve.

Saturday, April 1, 2017

Living with a chronic illness
is never easy – it can rob you of your abilities, your independence, your sense
of self … not to mention the pain and other physical symptoms. When your illness is cancer,MS, or another
well-known condition, it usually brings with it sympathy and support from those
around you: most people have heard of
these diseases, and have at least a basic understanding – they know these are
serious, and want to be there for you.
When it’s sarcoidosis,
however, that last part is often lacking.

With sarcoidosis (and many
other rare/less well-known diseases), there’s not a fast and direct line from
symptom to diagnosis. It can take years of doctors, tests, and
misdiagnoses before the right one is discovered, and even longer before a
helpful treatment plan is worked out.
During that time, the symptoms get worse, but the understanding and
sympathy from those around us often fades.

To an extent, some of that is
almost understandable. We seem to drag
on, often looking well though we say we feel awful, unable to answer the most basic
questions, like “what’s wrong with you?”
Our symptoms change from day to day, and often mimic or overlap with other
conditions. We call out sick from work,
cancel social plans, avoid chores … and no one really knows why.

That’s why Sarcoidosis Awareness Month (SAM) is so important. It gives us the opportunity to answer some of
those questions, to help those around us to understand what we’re going through,
and to help others living with sarcoidosis to know that they’re not alone. It gives us a chance to say the word, put a
face to it, and to build a community of patients and supporters who are in this
together.

Meet the Buttahfly

About Kerry

​I'm a glass-half-full kind of girl. More than that, really - I'm the girl who'll point out that if it's not full, you don't have to worry about spilling your drink every time you pick it up!

I am extremely fortunate to be married to my best friend - the boy next door I had a crush on since I was a child. Though we've been married nearly 17 years, people who meet us still think we’re newlyweds … and in a way, we still are! Through thick and thin, sickness and health, he has been my rock, my anchor, my greatest source of strength and support.

Over the past few years, I've been diagnosed with a number of chronic, autoimmune, and invisible illnesses (see What’s Wrong for the details). Still, I do the best I can to stay positive: this blog is my way of showing those with similar experiences that they are not alone. We may not be able to beat (cure) our diseases, but we can make sure they don’t break our spirits. At the same time, I’m hoping to educate our friends and family – those who want to be there for us, but don’t really understand the extent of our illnesses and how severely they affect us. With a little help, we can get through anything … together.

It's my mission to make a difference in people's lives, and I encourage everyone to do that in whatever way possible. A positive word, a helping hand, a donation (of time or money) to a worthy cause, even a simple but genuine smile can mean the world to someone ... and that someone could be you!

🎶We're Jinglin', Baby!

On December 9, I'll be jingling my bells at the Arthritis Foundation's Jingle Bell Run. Join us if you're in the area ... or support our efforts with a donation. Anything you can do would be greatly appreciated!

The Mighty

I've recently had a number of stories published on The Mighty, an online magazine of sorts for people with chronic illness. View my author page (and published pieces) here.

2017 WEGO Health Awards: Patient Leader Hero (Nominee)

“Sometimes the connections we make in online communities go above and beyond, truly changing our lives for the better.” This award recognizes those Patient Leaders “whose content has opened your eyes to seeing things differently … whose dedication has ignited the advocate within you to make a change … whose work has effected change for their community members. This Patient Leader's influence truly has the impact to make a difference. They're nothing short of a hero.” I am truly honored to be nominated.

I Did It!

Every day in April 2014, WEGO Health provided a prompt, and my posts here reflect my responses to those ideas, in terms of living with chronic illness(es). It was a great experience that inspired me to write more, enabled me to “meet” other bloggers and friends, and empowered us all to share our experiences in a unique and creative way.